We need to invest in the longtime ME research NIH has historically blacklisted or we could easily watch $10B disappear without actually solving LC. Moonshot legislation needs to explicitly address & correct NIH’s institutional bias against funding bio research into ME.

https://twitter.com/davidtuller1/status/1779489617361748235

I’ll be voicing my concerns & hope all #pwME & LC will too. Feedback on the draft proposal should be sent to LongCOVIDComments@help.senate.gov. Due by 4/23.

The draft legislation proposal is available here: sanders.senate.gov/wp-content/upl…

Low processing speed has had a profound impact on my ability to function, my relationships, & my “me-ness.”

https://twitter.com/ahandvanish/status/1616998961725820930

Decision-making (which you have to do tens of thousands of times a day) becomes slower, more laborious, & more dangerous. Everything from driving to talking to moving my body to figuring out what to eat becomes harder. Things that used to be easy & automatic… aren’t anymore.

On the last day of each month people w/ #MyalgicEncephalomyelitis (#ME #MECFS) & our allies are invited to share art of endangered flowers to call attention to both ME & these often ignored victims of the extinction crisis.

#MillionsMissingFlowers #togetherendangered For February I painted the flame azalea or Rhododendron calendulaceum, which grows in the Appalachian Mountains near where I grew up in Virginia. 2/

CW: suicidal ideation

I’m about a month out from my last “episode” so I’m gonna go ahead & call it. I tried Singulair/Montelukast this fall for shortness of breath. It’s a leukotriene inhibitor used to treat asthma & MCAS. It also has a black box warning for suicide. Within 5 days I felt frighteningly suicidal, panicked, & desperate to get out of my body & off of this earth. I was extremely disturbed by the violence & forcefulness of these thoughts, which only fueled my panic further.

The first time someone recommended "brain retraining" to me I was hopeful. I bought the DNRS program & faithfully did the guided meditations while walking in the woods every day, ignoring my dizziness, cognitive confusion, & trembling muscles. I, predictably, got much worse.

https://twitter.com/_diatoma/status/1734659041400397903

Since then almost everyone close to me has recommended it: my doctor, my husband, my therapist, my mom, my friends. If I have to hear another person try to sell me on this pseudoscience snake oil I will explode.

Almost everyone who knows I have ME/CFS has at some point suggested it may be psychological & that I should try meditation/therapy/brain retraining (all of which I’ve already tried. I continue to meditate & do therapy bc it’s good for everyone, but it’s obviously not a cure). I weather people’s unsolicited advice as gracefully as I can manage. What I can’t weather gracefully are the people who are close enough to me to know better, yet who continue to psychologize my disease, claiming they “just want to help.”

Hi, I'm Emily! I used to be a documentary filmmaker, teacher, environmental activist, artist, adventurer, wife, friend. Now I spend 22 hours a day in bed, too sick to interact w/ the world, too sick to watch films, much less make them.
#MillionsMissing
#MECFS
#LongCovid
1/ Over the past 3 years of the pandemic, millions more have joined me in this abyss of illness. We’ve been swept under the rug by the government, doctors, & society. We need research funding, financial support, treatments, a cure. We need our lives back.
#StillSickStillFighting
2/